Rare Disease – Page 241 – Patient Worthy

Hike For IPF This September!

Post author:Kristen Lord
Post published:August 15, 2016
Post category:IPF Rare Disease

This September, Chicago is having a Hike for Lung Health to help raise awareness for IPF. If Chicago is to far for you to go to participate then organize a…

source: pixabay.com

When You Pee Your Name in the Snow, is it Brown?

Post author:EmpatheticBadass
Post published:August 15, 2016
Post category:Glomerulonephritis Rare Disease

When you are diagnosed with a serious chronic illness like glomerulonephritis, you enter into an entirely new world. Suddenly, you’re spending time inside buildings most people never even noticed. Almost…

Ankylosing Spondylitis is a Pain in the Back

Post author:Erica Zahn
Post published:August 15, 2016
Post category:Ankylosing Spondylitis Rare Disease

Sometimes life can throw a mean curveball and try as you might, you just can't dodge it. Ankylosing spondylitis is one of those curveballs. For some people, it can lie…

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La enfermedad granulomatosa crónica solía ser una sentencia de muerte, hasta que las mujeres se movilizaron

Post author:Patient Worthy Contributor
Post published:August 15, 2016
Post category:CGD Primary Immunodeficiencies Rare Disease

No es común que las enfermedades raras cruce con la cultura pop, pero cuando lo hacen, vale la pena sintonizar. Este verano, espectáculo de Lifetime Television, "The Balancing Act", contó…

Editor’s Choice: What NOT to Ask, Sorry Not Sorry

Post author:Patient Worthy Contributor
Post published:August 12, 2016
Post category:Dystonia Lyme Disease Myasthenia Gravis Rare Disease

Welcome to this week's Editor's Choice! When you have a rare disease like dystonia, you come across a ton of different reactions from people in regards to your illness. One…

Meme: Strength Together

Post author:Rebekah
Post published:August 12, 2016
Post category:Rare Disease

No doubt there's strength in numbers. Maybe your family friends offer unending support that boosts you when you're low. Maybe you participate in a local support group or are part…

Close Up Shot of a Mic Lying on Stage by Gavin Whitner musicoomph.com

This Rap is the Best Way to Describe Narcolepsy

Post author:Kiki Jones
Post published:August 12, 2016
Post category:Narcolepsy Rare Disease

Featured Image is by Gavin Whitner at musicoomph.com. Dude, I’m sorry but this narcolepsy video needs way more than 90-some views. Posted on Grey Alquist’s YouTube channel, two young man made…

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All Aboard! This is What Living with a Rare Disease Should Look Like

Post author:Lady Kehveen Abernathy
Post published:August 12, 2016
Post category:Epidermolysis Bullosa Rare Disease

Imagine being 16 years old, and instead of meeting cute girls, going out with friends, and going to parties that get busted, you have to manage a rare, chronic condition…

geralt / Pixabay

This Little Molecule Has Big Potential to Stop Gaucher

Post author:Ronald Ledsen
Post published:August 12, 2016
Post category:Gaucher Disease Parkinson's Disease Rare Disease

When it comes to science and medicine, big things seldom come in big packages (get your minds out of the gutter). Groundbreaking discoveries that change our understanding of a disease…

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3 maneras de ser un tipo duro como este jugador de béisbol con ICV

Post author:Patient Worthy Contributor
Post published:August 12, 2016
Post category:CVID Primary Immunodeficiencies Rare Disease

dedo mutilado? contusión ósea severa? Fractura en la espalda? No, esto no es un catálogo de las lesiones del club de la lucha, éstas son algunas lesiones reales el Miami…

How Can the FH Registry Save Your Life?

Post author:Ronald Ledsen
Post published:August 11, 2016
Post category:Familial Hypercholesterolemia Rare Disease

Most people know that high cholesterol is a ticking time bomb, and that it’s important to eat heart healthy foods low in saturated fat and cholesterol. Public health awareness—and the…

Scary Situation: Rare Diagnosis Quickly Leads to Heart Transplant

Post author:PW Blogger
Post published:August 11, 2016
Post category:Rare Disease

Kim Pimley is a mover and shaker, a businesswoman on the go. She’s one of those energetic people you see running up an escalator, to save time, and also, just…

Write A Letter To The Editor For IPF!

Post author:Kristen Lord
Post published:August 11, 2016
Post category:IPF Rare Disease

September is IPF Awareness Month. A great way to raise awareness is by engaging your community. Write a letter to the editor of your local newspaper and share your story…

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Targeted Acromegaly Screening Could Create Better Patient Outcomes

Post author:Patient Worthy Contributor
Post published:August 11, 2016
Post category:Acromegaly Rare Disease

With rare disease, everyone is familiar with the concept that early diagnosis typically means better patient outcomes. Such is the case with acromegaly. According to a recent article in healio,…

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Cómo impresionar a su entrenador conociendo Estos Términos 5 de colesterol

Post author:Patient Worthy Contributor
Post published:August 11, 2016
Post category:Familial Hypercholesterolemia Rare Disease

Hipercolesterolemia familiar heterocigótica (o HeFH), nunca has oído hablar de él? Es un bocado. Es también una condición que hace que los niveles de colesterol de alta peligrosidad y, si…

Angie, Chloé and her husband Bill.

This Mom Wants You to Know How to Live Well with MS

Post author:Patient Worthy Contributor
Post published:August 10, 2016
Post category:Multiple Sclerosis Rare Disease

This summer, while visiting friends in Chicago, I met the most amazing woman Angie. She was out for the first time since she had her beautiful daughter, so we looked…

Meme: Beautiful Crayons

Post author:Rebekah
Post published:August 10, 2016
Post category:Rare Disease

Broken crayons still color an regardless of whatever part of your body is not cooperating with you, you are not any less beautiful, purposeful, and important. The colors of your…

Learn about Courageous EB Butterflies

Post author:Rebekah
Post published:August 10, 2016
Post category:Epidermolysis Bullosa Rare Disease

The Dystrophic Epidermolysis Bullosa Research Association of America (Debra) describes EB as "The Worst Disease You've Never Heard Of". It's a painful disease without a cure and it's rarity makes…

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Cómo detener convulsiones de su niño con un grano mágico

Post author:Patient Worthy Contributor
Post published:August 10, 2016
Post category:GLUT1 DS Rare Disease

¿Alguna vez has oído hablar de la deficiencia de Glut1? Basada en una historia ofrecida en News-Medical, y no tenían los padres de su hija diagnosticadaa los 4 años de…

This Girl Is Killing It in a Clinical Trial

Post author:PW Blogger
Post published:August 9, 2016
Post category:Rare Disease Wilson Disease

Emma Gaul’s story is a good reminder of how quickly life’s plans can change when your body turns against itself. Less than two years ago she was a vibrant and…

Dystonia is Making My Brain Crazy

Post author:Patient Worthy Contributor
Post published:August 9, 2016
Post category:Dystonia Rare Disease

My brain is CRAZY! At least, that’s the way I feel. I cannot explain how infuriating it is to have what I refer to as, a dystonia brain! So, what’s…

Bringing Awareness: Idiopathic Pulmonary Fibrosis (IPF)

Post author:Kristen Lord
Post published:August 9, 2016
Post category:IPF Rare Disease

Idiopathic Pulmonary Fibrosis or IPF is a disease where the tissue in the lungs becomes scarred and stiff making it harder for a person to breathe. When the tissue thickens the…

Hopeful News for Massachusetts Lyme Sufferers

Post author:Patient Worthy Contributor
Post published:August 9, 2016
Post category:Lyme Disease Rare Disease

As someone who went through long-term antibiotic treatment, I can speak to the tremendous financial strain it had on my family. Well, if you live in Massachusetts, new legislative action…

Es la respuesta a las convulsiones de los pacientes del GLUT1 DS realmente un termostato?

Post author:Patient Worthy Contributor
Post published:August 9, 2016
Post category:GLUT1 DS Rare Disease

Glucosa. Esto significa que el azúcar, ¿verdad? Está en su cuerpo, ¿verdad? Pero, ¿cómo se transportan y cómo sabe que su cuerpo la cantidad que necesita para el transporte? Lo…

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Sorry Not Sorry

Post author:Patient Worthy Contributor
Post published:August 8, 2016
Post category:Rare Disease

Last night as part of my boyfriend’s birthday gift, we attended a St. Paul Saints’ baseball game in downtown St. Paul, Minnesota. Anyone who knows me even a little bit…

Hike For IPF This September!

When You Pee Your Name in the Snow, is it Brown?

Ankylosing Spondylitis is a Pain in the Back

La enfermedad granulomatosa crónica solía ser una sentencia de muerte, hasta que las mujeres se movilizaron

Editor’s Choice: What NOT to Ask, Sorry Not Sorry

Meme: Strength Together

This Rap is the Best Way to Describe Narcolepsy

All Aboard! This is What Living with a Rare Disease Should Look Like

This Little Molecule Has Big Potential to Stop Gaucher

3 maneras de ser un tipo duro como este jugador de béisbol con ICV

How Can the FH Registry Save Your Life?

Scary Situation: Rare Diagnosis Quickly Leads to Heart Transplant

Write A Letter To The Editor For IPF!

Targeted Acromegaly Screening Could Create Better Patient Outcomes

Cómo impresionar a su entrenador conociendo Estos Términos 5 de colesterol

This Mom Wants You to Know How to Live Well with MS

Meme: Beautiful Crayons

Learn about Courageous EB Butterflies

Cómo detener convulsiones de su niño con un grano mágico

This Girl Is Killing It in a Clinical Trial

Dystonia is Making My Brain Crazy

Bringing Awareness: Idiopathic Pulmonary Fibrosis (IPF)

Hopeful News for Massachusetts Lyme Sufferers

Es la respuesta a las convulsiones de los pacientes del GLUT1 DS realmente un termostato?

Sorry Not Sorry

Let’s Work Together!

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